Chronic Pain Control Basics for ME/CFS and Fibromyalgia

This information was first published in the Feb 2000 issue of the Lyndonville Journal - a bi-monthly newsletter from Dr. Bell's medical office that preceded the Lyndonville News (DavidSBell.com). It is reproduced here with kind permission,* and offers insights that stand the test of time.

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Chronic Pain Control

Of the difficult but treatable symptoms of chronic fatigue syndrome (CFS) and fibromyalgia (FM), chronic pain is rarely treated adequately. Headaches, lymph node tenderness, muscle pain and joint pain cause considerable long term discomfort – sometimes mild, sometimes severe. There may be fluctuations in the severity of pain.

If pain remains one of your most important symptoms of CFS/FM, be sure to address it specifically.

General Principles

There are several general principles of pain management that should be understood by the patient:

1. Always use the least amount of pain medication. These drugs have side effects and may cause intolerance, and do nothing to cure the underlying cause. Don’t use them if they are not necessary.

2. Do not treat general malaise with pain medication. Sometimes, you may feel rotten but the pain is not that bad. Using pain medication is unlikely to be of help.

3. Communicate the pain clearly to your physician. There are many symptoms to address in CFS & fibromyalgia, and if [as your physician] I do not know that pain is the worst symptom, I may not attempt to address it. That is, if pain is one symptom listed among 20, I will not pay special attention to it.

4. Be patient and observe patterns. If the pain is mild and tolerable for two months, then bad for one week, do not go to the “big guns” right away. If the pain eases off after a week, you will not know if it is the medication or just the fluctuations of the illness. Once you understand the pattern, it may be reasonable to have a strong pain medication on hand for the bad episodes, then stop it when possible.

5. Assess the response to one class of medications well before moving to the next class. Many persons do not use ibuprofen correctly, and thus reject it thinking it doesn’t help.

6. Do not jump to strong pain medications early in the morning if the pain and stiffness usually ease off after an hour. It will take the medications that long to work, and then your are left with the heaviness of pain medications for the next few hours without needing it. You can approach it by taking a longer acting medication at bedtime, or by stretching or showering in the morning.

Medications for Pain by Class

1. Non-steroidal anti-inflammatory drugs (NSAIDs). This class is the standard pain relievers, many of them over the counter. If the response is not enough, make sure you are using them effectively and at the right doses. For example, ibuprofen may be effective taken three times daily to prevent severe pain, but may not appear to work if used only at crisis times. All can cause upset stomach, and even ulcers.

2. Acetaminophen (Tylenol® and others). This medication has no effect on inflammation but can be useful for headache and muscle-joint pain. It is a reasonable first attempt. It can cause liver problems if used in very high doses and should never be taken excessively. If the regular dosage does not help either add an NSAID or move to another medication. Do not push the dose.

3. New NSAIDS. For reasons I do not understand, sometimes other NSAIDS work better than ibuprofen and can be taken regularly and less frequently during the day. It is reasonable to attempt others in this class, usually by prescription, before going to strong medication.

These would include:

• Diclofenac (Voltaren®) 50mg three times a day, or the long acting Voltaren® XL 100mg once daily.

• Arthrotec® is a brand that combines diclofenac with the drug misoprostal to protect the stomach (50mg/200mg up to four times daily). Do not take if pregnant or even if pregnancy is likely.

4. Tricyclics. These drugs are the old fashioned antidepressants and improve pain, but must be taken regularly to be effective. They should be used to prevent pain, and never be taken just when the pain is bad. This is one type of medication that must be taken regularly, good days and bad. CFS patients are usually sensitive to them and lower starting doses should be used.

[Note: SSRIs are another type of antidepressant, which may be prescribed off label for chronic pain, see attached sidebar.]

5. Tramadol (Ultram™ – 50 to 100mg three times daily). I like this medication partly because the name sounds like Kurt Vonnegut designed it. It should be used with caution in conjunction with Prozac™ and tricyclics. It is a cousin of the NSAIDS and has some effect on the serotonin and norepinephrine systems as well as being a very weak opiate. While it is unlikely to cause dependence, some persons say it is unlikely to be of value. But it is worth a try.

6. Baclofen®. This is a nifty drug; cheap, and when it works – great. Unfortunately, it does not work very often. It is best when the muscle pain is of a cramping or spasm quality, which is why it is used in multiple sclerosis. It is related to the benzodiazepines such as clonazepam or alprazolam and should be used cautiously with these. Some sedation is likely, and the dose should not exceed 10mg three times daily.

7. Seizure medications. These must be used with caution, as the side effects may be significant. But when they work they are great. Not casual medication.

a. Neurontin(Gabapentin™ 900 to 1800mg daily). This medication was developed for seizure disorders and may cause dizziness or increase fatigue. The mechanism of pain relief is uncertain. Significant side effects are possible and it should be reviewed carefully before use.

b. Carbamazepine (Tegretol® 100mg twice daily to a maximum of 1200mg a day. Tegretol® XR 100mg twice a day.) This seizure medication can cause excitation, bone marrow problems and allergic reactions, and should not be used with erythromycin, Prozac and other drugs. It is a cousin of the tricyclics and sometimes gives good pain relief.

8. Narcotics (opioids). While these drugs always have the potential for addiction, it is said that addiction rarely occurs when used to treat severe pain. Intermittent use is best if possible. Doctors are usually reluctant to use narcotics because of the risk of addiction; you don’t need any more problems than you already have. Propoxyphene (Darvon™) is my least favorite drug because it may have a high addiction potential yet wimpy pain relief.

When people hear the side effects of medications, they frequently become afraid and unwilling to try medications. If you were to see the side effect profile of acetaminophen (Tylenol®) you would probably never take it because it includes death, not just because it gets laced with cyanide.

When 280 million people use a drug, side effects are bound to occur. Keep in mind that if you saw the side effects and dangers of taking a shower (i.e., slipping in the bathtub, etc.) people would not bathe. That, however, also has its side effects (loss of friends, physicians, etc.).

Use common sense. Any medication that does something will have side effects. Some of the safest medications are only safe because they do nothing at all. Consider medications as you would consider driving a car. They are both inherently dangerous, but are helpful if used properly.

Both Lyrica (pregabalin) and Cymbalta (duloxetine) have been FDA approved for fibromyalgia. They both help most people with their fibromyalgia pain; the studies have shown that the majority achieve at least 30% improvement in pain.

They have different mechanisms of action. Lyrica works on the calcium channels, which are specialized parts of the nerve that conduct pain signals. Lyrica blocks the pain signal conduction through the sensitivity of the calcium channels. Cymbalta works on the nerve pathway that inhibits pain. It works by increasing the concentration of both serotonin and norepinephrine, two neurotransmitters in the spinal cord that activate nerves that block pain.

So Lyrica works to decrease pain intensity and Cymbalta works to increase the inhibition of pain. Lyrica can cause sedation, swelling and weight gain, and one starts at a low dose usually in the evening and tries to increase the dose to achieve pain-relief.

Don’t get discouraged if you’re not noticing any improvement on a low dose; the main reason for starting “low and going slow” is to make sure you’re tolerating the medicine. Sometimes you need to get to a higher dose, perhaps 300 mg/day or more total before you get pain-relief.

Cymbalta works best when taken in the morning and usually starts with a 30 mg dose for the first week and then increase to 60 mg in week two. It can cause nausea, dry mouth, increased sweating and decreased appetite, but is usually very well tolerated. In my opinion, Cymbalta has the better mechanism of action and is better tolerated.

It’s not uncommon to be on both medications, so check with your physician and see if you’re a candidate to take one or both of these medicines.

Savella® (milnacipran)

A third FDA approved drug for fibromyalgia, Savella, is similar to Cymbalta in that it works to concentrate and increase the effect of serotonin and norepinephrine in the brain, though exactly how is not known. It would not be taken with Cymbalta owing to risk of serotonin syndrome (excess serotonin, a serious drug reaction). It may generally help mood and fatigue more than pain.

SSRIs prescribed off label for pain

SSRI stands for selective serotonin re-uptake inhibitor and refers to the class of medicines called antidepressants. They work by blocking the breakdown of serotonin (a hormone found to be low in FM and depression), thus making more serotonin available which can improve mood.

An off-label use of SSRIs is the treatment of chronic pain, and it is felt that the increased serotonin helps the body reduce pain. That’s why a lot of people may notice some benefit with their fibromyalgia pain when taking an SSRI. The potential side effects can include weight gain, sexual dysfunction, and making you feel too “numb.”

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Note: This information has not been evaluated by the FDA. It represents the personal research and opinions of the authors, is for general informational purposes only, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. ME/CFS/FM is an extremely complex illness, and advice in a newsletter may not be appropriate for a specific individual. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

In the article it is stated that "Tramadol is unlikely to cause dependence, some persons say it is unlikely to be of value. But it is worth a try."

In my opinion Tramadol is often misunderstood and wrongfully considered harmless. Tramadol actually can cause moderate to severe physical dependency (see PMID 12563592 or http://www.krpc.com/ProfessionalEducation/RunCourse/2). Especially women quite often seem to experience withdrawal symptoms. As a matter of fact a Dutch institute started an investigation on this topic a while ago, because they noted that women often had problems to stop with this medication. Bottomline: Tramadol should not be considered so harmless as it often is, and patients should be warned for dependency and withdrawal issues.

Thank you for posting this. My new doc convinced me to take tramadole despite the fact that I have a lot of trouble with side effects from pharmaceuticals. It was a nightmare from start to finish. I had rapid heartbeat, headaches & tremors from it. I took it for 3 agonizing weeks before discontinuing it. Then, I had horrific withdrawal symptoms from it. When I contacted my doctor, she said that i did not need to seek medical help as tramodole is not addictive & there was no way that I had withdrawal. She also told me that side effects were not an issue with this drug. I have read accounts from those who feel they were helped by this drug, but I was not one of them.

chronic pain control for ME/CFS and Fibromyalgia

Posted by: WatermaidenJan 25, 2012

Thank you David for a concise, at times humerous, list of drugs used for these syndromes(?). They were short easy to read and very helpful. As a Fibro patient (fibro warrior of 18 yrs). I have tried many many of these drugs. Sometimes with disasterous side effects and rarely getting my pain below 6 on the little happy face chart hospitals and doctors are using now. I tried Lyrica (still crab at their tv comercials) which made every thing worse I swear! Then when Savella came out a new try, even worse, besides being in bed constantly I swear it made my pain just worse! I wanted to cry I felt like I was just being difficult, afterall, other people were doing well on these drugs. Now I have Cymbalta which I thought was just for depression and all these yrs I have tried different anti-depressants with "incidental weight gain" which I never seem to have lost from each new drug! So I have weight gain and fibro and a doctor who says if I walked a few miles a day I would do so much better. (Okay skinny Bitch I get to sit on you for that!). I found a pain clinic where people believe ME! They are kind and helpful and some of the angels of nursing on the planet. But before that I went to a pain clinic that seemed to be a doctor who just decided if she said she was a pain doctor it was so! Not one paitient in her office didn't have pain tremors. No one had a clear look on their face it was all just pain, pain and more pain (I left there to find my current pain clinic!)
I digress, thank you for an up to date update!!

I too will be participating in pain clinic program here in Sask. I have tried Cymbalta, but was taken off of it for cost factor. I am currently taking 900mg of gabapentin FOUR times a day. All I can say for sure is that the additional weight that I have put on is not making my situation any better. I am in limbo with my disability insurance because after treating me for this for almost two years, my current doctor has failed to fill out the latest forms requested by my insurer. This has been totally devastating to my family and I now face loosing all of my drug coverage as well. After two years of medication, I dread to think of what stopping medication will do to me . The additional stress of this matter is tearing my family apart and making my symptoms much worse .

Chronic Pain

Posted by: barb-joyJan 25, 2012

You mentioned a pain clinic. I wonder if it might be in my area....Ottawa? If so would appreciate an address. Thanks

Response to Watermaiden

Posted by: joni77Jan 29, 2012

I read your comments and would like to share experiences with you and info. on pain clinics. Don't know how to do that, tho. If you do and are interested in an email chat, let me know and how to do it.

chronic pain control?

Posted by: r1r1r1Jan 30, 2012

Medicine should not focus on "controlling pain" but on preventing and curing pain. Doctors and researchers constantly brag about how much they know about pain- and the prevalence of pain is constantly rising- as it has for over a generation. We need new doctors and researchers with a new vision and plan for our current approach to people in pain is a terrible failure.

Hi, I am a 10 yr fibro "warrior" and an R.N. with 13 years' experience. I have been tried on literally EVERY med that could possibly help fibro, and tried every treatment I know of, with pretty good success after years of trial and error, and a great doctor who let me take the lead in my own treatment. He believed from day 1 that my pain was as bad as I said it was, as debilitating as I said, etc. And he trusted that I was the expert on MY body, more than he was. He actually said, "I don't just go by what the research says is effective, but also what the PATIENT says helps them." Lucky for me, because the research often says, "You don't treat fibro with narcotics!" I was in 10/10 pain for 8 MONTHS STRAIGHT and ready to end my life until I was prescribed opiates for pain, which made it possible for me to function well enough to go back to work! I just wanted to share that info, and the fact that baclofen (muscle relaxer) has been extremely helpful for both my mood and my pain (which makes sense if you understand the mechanism of action for the drug). Just wanted to say that this article was fantastic. I found it succinct, well-written, medically accurate, informative and thorough. I will be passing on this info to the online support group in which I'm a member: "Friends Because We Have Fibro/CFS/ME." Check it out!